Easter 6 years ago

6 years ago, Easter weekend, was when we knew it was time. It was the moment we were told about... When it is time for transplant you will know. We spent the weekend at my parent's at the shore. Luke was on his breathing machine (BIPAP) almost the entire day. He laid around the whole weekend too tired to do anything. No walks to the library, no walks to the beach, no riding his bike, etc. We watched him slowly decline and then Easter weekend 6 years ago it hit us... It was time. I remember he went outside with the other kids to look for hidden eggs, but he just stood there. Too tired to even bend down and pick them up. About 5 months later he got his gift of life and had his double lung transplant.
The first 3 years after transplant he was hospitalized at Children's Hospital (flu, open lung biopsy, and a line infection were the reasons). Last year was his first year home for Easter after transplant. This year was our first year back to my parent's in Ocean City, NJ since transplant.
And this is what we saw:

Searching for Easter eggs all over without a problem (BB8 was disconnected for the egg hunt as to not slow Luke down). No getting tired, no difficulty picking up eggs, no more having to watch his siblings hunt for eggs while he watches.

1 mile + walk to the library without a problem.

A basket full of eggs.

Every Easter has been special since his transplant. Whether in the hospital having egg hunts for all the children in his room or running around the yard finding eggs. Whether with our family or sharing it with his Children's Hospital family (and sharing bamboozled jelly beans with the nurses) we feel so blessed.

It is always challenging having holidays without eating. So much of what our culture does revolves around food. Easter is no exception. It is one more way of reminding Luke he is different and that he can't enjoy this holiday in a way he desires. I feel so blessed to watch him over the past two+ months handle the not eating thing. Yes there are definitely times of frustration, anger, and sadness on his part. But he really has done so much better than I ever expected. 

Easter is about new life.. And we have seen first hand new life through Luke's double lung transplant. 

As Luke's mom, Easter is so important. We know there will come a day when he is no longer with us. Knowing Jesus has risen and taken all of our sins is huge. Knowing Luke will have the ultimate healing and never be tied down by medical equipment is huge (though in my human mom self I want to hold onto him here on earth as long as possible). Knowing one day we will all be together again in Heaven is what will get me through not having him here with us. Today we watch our blessings in front of our eyes. We especially thank God for sending Jesus to be our Savior and giving everlasting life.

Beating the Odd... 5 yr 50%

In the lung transplant world the average statistic quoted for survival is at 5 years, 50% of lung transplant recipient are alive.  There have only been 194 lung transplants done on 6-12 year olds (the age group Luke was in) and in 2010 hr was one of 9 in that age group to have a double lung transplant. Thought Luke was 9 he needed a 6 year olds lungs as his lungs never really allowed his body to grow. So when you are the parent of a 9 year old (and his first transplant eval was at 6 years old) there really are no experts with big numbers (when in 27 years only 194 are done in 6-12 year olds). The most important thing for us was that we has that gut feeling it was the right place, we felt we were a part of a team, and where we went was willing to care for a child with many unknowns and who was deemed , "too high risk to hurt their survival numbers" by another institution. Ever since July 2007 we have known Childrens Hospital Pittsburgh is that place. Pittsburgh is the perfect place for Luke. He is alive because of the incredible team there. I think every single employer there has in some way touched Lukes care and we are thankful for each one of them.

These guys have a special place in our hearts! Geoff Kurland (on the left) is a part of the original group of Childhood Interstitial and Diffuse Lung Disease Childrens Research Network doctors. It was at one of the chILD conferences we were introduced and a month and a half later traveled across the state to Lukes transplant eval just before his 6th birthday. In the middle in Jonathan Spahr who is the one who walked into the CICU waiting room at 8 am on August 14th after checking in the OR Luke was in and reported all was well and we would be able to see him soon. Seeing him walk through the waiting room doors was so comforting. These two guys have been a major part of why Luke is here. Luke has forced them to become not only experts in the unknown lung disease but also in the unknown intestinal issues. 

Pictures of how many different departments impact Luke everday.

 Nutrition/Caff

Housekeeping

School program

Volunteers

Sib Center/Child Life

Nursing

Music Therapy

Art Therapy

PCTs

Drs in training

(Residents, fellows, med students)

There are many others... Resp therapists, those who work in the lab/engineering/registration/coordinators of care/social work/publuc relations/Childrens Miracle Network office/OR/Anesthesia/specialist doctors/Infusion Center/Radiology/CICU/CT surgery/ many more Im sure Im forgetting.

Every single one at Childrens Hospital Pittsburgh has played a part in Lukes life.

Of course there are thise that we could not have made it without... His transplant surgeon and the CICU team during the first critical days after transplant. His transplant team since 2007. Special PCTs on his floor who make him laugh, are the butt of his practical jokes, and even buy him illegal oreo cookie ice cream pops which heal his belly!  And some very special nurses on 7A, now C and all over CHP. From the nurses who had to advocate (step on some toes) to do what was right for Luke, to the nurse who had a heart transplant and could relate to Luke in a special way, to those special nurses who were there holding his hand during the most horrible moments, to the nurse who kept him throwing his IV pole out the window, to those who made him laugh, to those who kept me sane, to those who have his 25+ med list memorized complete with times (Ok sadly there are too many of you), to those who have brought special presents just when he needed it.... And of course his beloved Anna. 

Pittsburgh is and has always been the perfect place for Luke and our family.

To Luke's donot family... We can never thank you enough for giving Luke life. There are no words, cards, gifts that coyld ever express our gratitude. There are no words for our sorrow over your loss. Your decision in the hardest moment of your lufe gave Luke life and most importabtly gave him the ability to enjoy life.

Lukes nurses at home who have a unique window into our private lives for the past 13 years. Our families who have road the roller coaster with us.. thank you. Glen who jumped into this life with both feet and has become an expert at IVs, feeding tubes, medications, oxygen, vital signs... You are amazing and I am blessed to have you. Our other children.... I know it is so tough having a brother with serious medical needs but you all shine in your own right and I pray growing up with Luke allows you to bless others with a compassion  that is unique.

Everyone who has followed Lukes story, prayed, send gifts, contributed to his medical fund, brought meals, and liked his Photos of the Day you all are special and a part of Lukes journey. 

Yesterday, Glen and I realized we were a bit lost without Luke. For the past 14 years our life has been arranged around his medical care/nurses/medical needs. Our minds immediately go to when the next med is due (6a-8a-10a-12p-3p-8p-9p-10p-11p-12a). The absence of the hum of the oxygen concentrator caused a eerie silence the past couple of days. No nurses in our house when we were home for days was odd. Not having that structure was so abnormal.... So not us... After 14 years so odd. 

This life with Luke is our life.. it is our normal. How do we do it.. one day at a time.. sometime we dont do it well... But we do it just like any other parent who has a medically fragile child does it... One day (sometimes minutes) at a time. 

As I was writing this, I received this video. This weekend at camp I am sure will be life changing for Luke. He has never been away from us before (except for school which he always attended with his home nurses) for more thab 3 hrs (and that has only been in the past year on very special occasions with us close by). What is a normal right of passage for most kids is like climbing Mount Everest for Luke... This was huge!

A huge thanks to Camp Chihopi (Specifically Bev) who invited Luke to camp this week. Camp Chihopi is for kids who have had liver and bowel transplants. Due to the small number of lung transplant patients (and that many of them have CF so there is infection risk with groups) there are no individual camps for them. Lung transplant kids are rare. Luke having the extra medical issues (requiring daily IV fluids, daily IV medication, a lot of medicines, as well as still needing night oxygen, etc) adds an unique twist to finding a place that Luke could even attempt this. Honestly I likely would have never agreed if there werent CHP doctors, nurses, and his beloved Child Life staff all running the camp. You all have given Luke the opportunity of his lifetime and changed his life for sure. One thing Luke always longs to be is "just a regular kid."

some ups, some downs

It has been a while since I posted. as I have mentioned the transition back home after a long hospitalization is a stressful time. not just for Luke who adjusts to being back home and that routine, but for everyone as roles readjust.
We have had all kinds of germs attacking our house.. two GI viruses and two respiratory viruses. Not everyone got each of them but I especially was knocked down by one of each.
In April Luke came out for regular appointments. He had a cough for a couple of weeks and generally wasnt doing great. His PFTs dropped by 50%. There was concern he was showing signs of rejection. Two weeks of antibiotics were prescribed. We came back two weeks ago for repeat PFTs and a bronchoscopy. Thankfully his PFTs were back up to his normal and his bronch looked good. So incredibly thankful for that!
On Monday afternoon Luke developed a high fever. His pilot, Joe, from Wings Flights of Hope got us out to Pittsburgh very quickly. I was so sure he had bacteria in his blood. We have been here two and a half days and no bacteria has grown from his blood cultures so we are headed home.
We had plans to spend two nights in Chincoteague Island, VA this week as a family get away. It is something that has been on my bucket list. Since I found a great deal on Groupon, we were unavle to cancel since Luke got sick less than 72 hrs before the trip. Glen ended up taking the kids yesterday evening because everyone needed get away time. We are very thankful that Lukes pilot Joe will be able to get us home today abd Luke, my mom and I will drive down once we get home.
This is our shortest stay ever, but so thankful for all the amazing nurses we love so much cared for Luke. He had some of his favorite dogs visit and was able to go to the annual hospital Prom last night.
some pictures to catch you up to today:

In March we adopted three cats from the shelter. This Is Luke meeting his cat King Tut.

We got away for a night to Great Wolf Lodge in March for a well needed family time.

King Tut has been an amazing cat for Luke. Snuggling at night...

A quick ER stay in March when Lukes GJ tube broke and had to be replaced.

schoolwork... It has had its ups and downs.. King Tut also supervises Luke during schooltime.

A service project with Boy Scouts

Bowling with scouts after earning merit badges and his scout rank.

Luke was asked to be part of a Donate Life celebration for Organ Donation Month. He raised the Donate Life flag at St Lukes Hospital (where he was born).

Easter Sunday

After the egg hunt

Out to Pittsburgh in April.

This set of PFTs was concerning 

Lukes amazing transplant pulmonologists.

Pre prom pictures with his special friend Devon

finally had his first overnight tent camp out with his Boy Scout troop.

Miracle League baseball started up

successfully set up his tent

All packed for one night (with 3x as much as Logan)

Logan and Luke practicing their tent skills.

Back out to Pittsburgh two weeks ago

Puzza and Guardians of the Galaxy after his bronchoscopy.

Monday night.. high fever, retching, rigors, feeling horrible

Pilot Joe to the rescue... Wisked us out to Pitt

Lukes special doggie friend, Ike

Making crafts at the prom

wiped out from tue prom!

Happy to have grown enough to try out Gregorys bike last week.

Grandpa helping him with baseball skills last week.

Video games with his friend, David (a volunteer at the hospital)